Pulling the Sheets Off My Sleep Apnea by Robin Gorman Newman

When my son was born, sleep deprivation was a given.  Between infant nighttime feedings and creatures that go boo in adolescent nightmares, my husband and I were regularly on call.

Fast forward, my son is now a teen, and I’m a highly symptomatic peri-menopausal mother.

As a later in life mom, I regularly preach the importance of self-care, but last summer, I was thrown a curve ball.  I was diagnosed with moderate obstructive sleep apnea (OSA), after having a sleep test when routine bloodwork revealed an elevated hemoglobin level.  I was relieved not to have a more serious disease, but I soon realized that OSA is way more than snoring and yawning and is not to be ignored.  Untreated sleep apnea has been linked with high blood pressure, heart disease, type 2 diabetes, stroke, memory problems, weight gain, and even automobile accidents.

According to WebMD, “When you have this condition, your breath can become very shallow or you may even stop breathing — briefly — while you sleep. It can happen many times a night in some people. Obstructive sleep apnea happens when something partly or completely blocks your upper airway during shut-eye. That makes your diaphragm and chest muscles work harder to open the obstructed airway and pull air into the lungs. Breathing usually resumes with a loud gasp, snort, or body jerk. You may not sleep well, but you probably won’t be aware that this is happening. The condition can also reduce the flow of oxygen to vital organs and cause irregular heart rhythms.”

I’m not someone who throws in the towel (or blanket) readily, and I don’t plan to now, but this has proven a real challenge. It’s hard for those who have not experienced it to understand.  It’s not that you don’t sleep…it’s that you never feel refreshed.

My pulmonologist said the gold standard and most effective protocol for sleep apnea treatment is to wear a CPAP (continuous positive airway pressure) mask.  According to Medicinenet.com, “Patients with obstructive sleep apnea treated with CPAP wear a face mask during sleep which is connected to a pump (CPAP machine) that forces air into the nasal passages at pressures high enough to overcome obstructions in the airway and stimulate normal breathing. The airway pressure delivered into the upper airway is continuous during both inspiration and expiration.”

To date, I’ve been through five different masks.  I’ve tried hard to persevere, but have found an obstacle with each.

When I first saw them and was asked to choose, I broke out into tears. Sleep with this for the rest of my life hooked up to a tube and machine?!  I took a selfie wearing one, which I shared with a few friends.  One readily replied…”Do not post that on Facebook!” – not that I had planned to, but it reaffirmed how I felt I looked…like Hannibal Lecter in Silence of the Lambs – minus the bars on my mouthpiece.

Because I am a mouth breather, I initially wore a mask that covered my nose and mouth, but it leaked air often when I turned over, creating a whooshing noise that awoke me.  I tried variations of it by different companies, and my doctor said I should go for a nasal pillow mask and learn to keep my mouth shut at night.  This went somewhat better, but the stiff plastic straps going across my cheeks grew uncomfortable, inspiring me to make my own straps using moleskin pads. I was able to live with that, but grew less tolerant, feeling sweaty at night from the straps.  There is a CPAP pillow that some might find helpful.  I’ve also heard that there are companies that will custom make a CPAP mask to your personal specifications using 3D printer technology.  Perhaps this will become the wave of the future?

A friend referred me to a dentist with an expertise in sleep apnea, and he made me a custom oral appliance (using 3D printer technology) to sleep with that advances your jaw gradually forward so help prevent your tongue from closing up your airway. During my first visit, he took out a tongue chart and explained how there are four types of tongues, and I have the worst anatomical structure….a large tongue with a small airway. Along with the dental device, he suggested I wear Breathe Rite strips.  I found something I prefer called Sleep Right.

Who knows how long I’ve had the apnea and didn’t know?!  But, what I have learned is that as we age, any muscle in the body can become flabby, including your tongue.  So, I decided to research the subject, and uncovered a host of tongue and throat exercises that I practice, with the hope of improved nighttime tongue control.  I also learned that sleeping with your head elevated is advantageous, and I discovered the genius Mattress Genie by Contour Living. The motorized bed wedge, which easily slips under your mattress, elevates by remote control the head of your bed (any size and weight up to 1,000 lbs), alleviating the need to sleep on a pile of pillows, and is way less pricey than an electric bed.  Thankfully, I already sleep on my side, which is highly recommended as well.  There is also a folding bed wedge that comes in different sizes and is portable. And, my sleep apnea dentist advised me of the benefits of regularly playing an instrument called the Didgeridoo….so I have one on order.

I will need to have another sleep test to see how I’m now making out, but hopefully I’ve hit on the combination that will do the trick.

I’d always taken sleep for granted.  In college, I could easily pull all-nighters cranking out term papers under deadline.  And, when my mother-in-law complained profusely about not sleeping, I didn’t grasp how that felt.  Now that I’m living it, it’s become a frequent topic of conversation for me, always hoping someone might relate a sleep apnea success story.

Interestingly, Arianna Huffington, co-founder and editor-in-chief of The Huffington Post, has just written and published a book called The Sleep Revolution.  A self-proclaimed “sleep evangelist,” she states “It’s the gateway through which a life of well-being must travel.  Sleep affects our mental health every bit as profoundly as it does our physical health.”  And, she’s taken on the crusade of empowering others to sleep as they should, including launching a campaign this spring called #SleepRevolution College Tour, to educate students on campuses about the importance of sleep and the dangers of sleep deprivation based on recent scientific findings.

With sleep apnea, it’s more complicated than practicing meditation, taking Epsom salt baths to relax, using white noise machines, lighting aromatherapy candles, turning off electronics and wearing soothing eye masks, to inspire a sound slumber.  My hope is that the medical establishment will take on sleep apnea in a bigger way and endeavor to come up with still other solutions. There are those in my personal social circle and beyond who suffer and have not treated it because the options don’t feel viable. And, insurance companies aren’t always cooperative, as you typically don’t snap your fingers and nail the solution out the gate.  Surgery for some may help, as can weight loss, but it’s not a surefire cure.  Thee is a nerve stimulator treatment called Inspire Therapy that I recently learned of, but I’m not sure what to make of it.

I asked my sleep apnea dentist, Dr. John Peterson in Oceanside, NY, why sleep apnea seems almost epidemic (there are even groups devoted to it on Facebook), and he shared that over the years, the structure of the human body, including the jaw, has evolved.  Primates had larger jaws and throats than modern man, yet our tongues and airways serve the same function.

I also spoke with Dr. Daniel A. Barone, who specializes in sleep medicine at Weill Cornell Medicine in NYC, who offered intriguing insight, “If someone has been behind the eight ball for some time with sleep issues, it can take the brain weeks to months to rewire itself.  Having consistent bed and wake time is very important.  Women typically, when they are younger, are protected against sleep apnea, but when the hormones progesterone and estrogen get removed from the body as women enter menopause, the likelihood of sleep apnea  goes up and reaches the level almost equal to men. (Men tend to experience more sleep apnea because they have thicker necks.)  When estrogen is not present, fat distribution can accumulate in the neck making the airway that much smaller.  Progesterone has many effects in the body, including as a respiratory stimulant, so when you don’t have that around, women may not be breathing as deeply, and these all play a role.”

“In the future, sleep apnea will become more prevalent as society gets heavier and heavier. Not everyone who snores has sleep apnea, and not everyone who has sleep apnea snores.  If there is any doubt, have a sleep test done, which is not a painful thing.   If it can prevent certain things from happening down the road, and to help you feel better, it’s worth it,” added Dr. Barone.

Ms. Huffington, if you’re reading this, perhaps you might include the plight of sleep apnea patients in your #SleepRevolution.  According to the National Sleep Foundation, more than 18 million American adults have it, and it affects children as well. That’s nothing to snore at.  We, like others who are sleep starved, would be forever grateful to regain a night of restorative zzz’s utilizing a treatment strategy we can live with, literally.

 Note: If you suffer from sleep apnea, I invite you to join the dialogue and post a comment.  I’d love to hear how it’s going for you and ideally what has worked.  Feel free to write to me privately as well, [email protected].  And, I will continue to share my progress, over time, through my blog. I hope my personal experience will prove helpful to you or someone you know who suffers from sleep apnea or has yet to be diagnosed.

Tags: 50 something woman, Arianna Huffington, bed wedge, Didgeridoo, dr. daniel barone, electric bed, later in life mother, obstructive sleep apnea, perimenopause, robin gorman newman, sleep apnea, sleep deprivation, sleep medicine